Sunday, August 30, 2009

Kitchen Fun!

Yesterday, AnnaKate and I had some fun in the kitchen. I needed to peel some butternut squash so I decided to fill up the sink and let AnnaKate play while I worked. She had a ball! She poured, splashed and giggled. Unfortunately, she poured and splashed water all over the kitchen and I never got my squash peeled BUT we had fun.

Cindy the CPAP has turned out to be a hit! Right now we are just introducing AnnaKate to the mask and she actually likes it. Today she even brought it to me to put on her. Can you believe that? We are not out of the woods just yet, she still has to learn to like the pressure of the air when we turn the machine on and don't forget sleeping with that crazy thing on.

I did get my squash peeled today and my first batch of butternut squash soup is on the stove. The house smells so good. I just can't wait for fall.

Friday, August 28, 2009

We're Back!!

Whew...we are back from blog hiatus! I will try hard not do that again until next August. Being a teacher, the back to school routine is very busy and tiring. A blog break was needed but now we are back with lots to share!!

At the first of August we went to visit Holly and the boys in Maryland. We had such a great time playing, eating and shopping! Look closely and you will see pictures from our day with three kids in IKEA!!

I started running in the spring with some girlfriends and I have found that I really love it! I ran my first 5K in August and was so pleased with my time of 26:41. I have set lofty goal of doing a half marathon in December!

(Which reminds me that I want to remind you to check out Addie's dad. Addie is an RTS sister of AnnaKate' s and Addie’s dad, is running the Milwaukee’s Lakefront Marathon 2009 to raise awareness about RTS. “26.2 miles of feet pounding pavement is a challenge, but the finish line is clear and concrete. When you get there, you are done. Families touched by Rubinstein-Taybi Syndrome have an endless course ahead of them, with no clear marker for when things might ease up. If not for the support of other families, there might not be any easing up at all.” Good luck to Michael, we are all cheering for you.)

Here are some pictures of the run and my great running buddies, the MRRC. The back of our shirts says "Run Teacher Run!"

You may remember that AnnaKate had her second sleep study last month. We went back to the doctor yesterday to discuss the results. She has significantly improved since her tonsillectomy- which is great! She is still having some sleep apnea difficulty but her biggest issue is hypoventillation. Basically she is not exhaling enough and her CO2 levels are getting too high. To help AnnaKate get better quality of sleep she will begin to use a CPAP at night. The process is very gradual. Today we got the machine and her mask. For the next few weeks we will spend time getting her used to the mask. The we will let her get used to feeling the pressure of the machine. We will go back for another sleep study on October 2 and they will monitor her as she uses the machine to sleep for the first time. This process is long and gradual so hopefully, AnnaKate will transition well to this strange apparatus. Today the home health nurse came to drop off the machine and try the mask on AnnaKate. We could not believe it but she actually wore the mask for about 15 minutes and it really did not seem to bother her. Let's keep our fingers crossed that she stays this laid back!!

I mean...really????? Isn't this ridiculous....

Our little "elephant girl"!!!

Sorry for not commenting on your blogs lately...I will be better!!

Have a super weekend!


Saturday, August 8, 2009

Jessica's Blog Baby Shower

My dear friend, Jessica, is having a baby!! She is one great mama to AnnaKate's friend and RTS brother, Alex. We can't all be with Jessica so we are having a Blog Baby Shower for her. How much fun!! As I type this I am enjoying the virtual cake, punch and delicious food. I am so glad we don't have to play those silly diaper smelling games!

This is Jessica's fourth child so she is going to need some gear to help corral all these little ones. Thankfully Joel and Noah are older so they can help out. Maybe we should give Jessica a roll of quarters so she can pay the boys to do things like change diapers and make bottles. That would be helpful, right?!? Instead of hiring child labor, some other RTS mommies (Christine, Kelly and Myssie) and I decided that Jessica needed a great sling to carry baby number four in. Our gift to Jessica is a gift card to purchase a Kangaroo Korner Baby Sling. She can pick out the right color when the baby comes...I know it is going to be a girl but she swears it will be another boy. We will have to wait and see!


We love you and are so excited for you and your family! Joel, Noah, Alex and baby number four are so lucky to have you as their mama!

Christine, Kelly F., Myssie and Kelly W.

Saturday, August 1, 2009

Sleep study...mission accomplished!

So we had our second sleep study last night. Our previous one was last summer and since then AnnaKate has had a tonsillectomy. We were hoping that the tonsillectomy had solved all of her sleep issues but it became apparent that maybe it hadn't. So we headed off for some Friday night fun!

I thought this sleep study would be better than the last one because AnnaKate was older and this time I was going to be armed with Billy and the DVD player for the prep. It did help tremendously. The hook up takes over an hour so some distractions really made a big difference. AnnaKate was hooked and ready about 9:30. She pulled off a few things within the first 15 minutes but after those reconnects she was able to sleep from about 10:00-4:00. The tech did come in a few times to check wires and other things, but she had a good 6 hour stretch. ( She did...not me!!) At 4:00am the oxygen sensors in her nose were pulled out and needed to be readjusted. Unfortunately, AnnaKate never went back to sleep. I tried hard but knew it would not happen. So at about 5:15am, we were able to get unhooked and head home. They had gotten plenty of information for the study.

The tech was the same one as last time so I had some rapport with her and I decided to pump her for information as we "dehooked" AnnaKate. She said she did still have some oxygen issues while in deep sleep. But last time AnnaKate had to get blood drawn in the middle of the night because her oxygen was so low and that did not happen this time so we have made some progress. We head back to see the doctor and discuss the results at the end of August. Whatever lies ahead, we can handle it!

We are headed for a visit with Holly and the boys this week. I will post some great pictures when I return.

AnnaKate went to the door and was ready! If she only knew what lies ahead.

Watching a little Curious George.

The hook up begins

She was so tired!